By Jennifer Dyer
I’ve always wanted to be honest here. Sometimes I still hold back, fearing what will happen if I let others see my raw emotions over the struggles of raising a child with special needs. I suppose that’s why I haven’t blogged much in the last year–too many painful moments I didn’t have the strength to share. Happy moments, too, but so little time to write. But as I reflected over this past week, I’ve decided I’m probably not alone in my desperate thoughts or my moments of deep frustration. So, I decided to share. I hope you know you are not alone. I hope I’m not alone, either. Autism isn’t easy, but neither are so many of the other challenges we all face.
In early March, Rachel started talking about field trips. It began with her signing “Brown” and “Bus,” meaning she wanted to take a brown-bag lunch on the bus, which is what happens as part of all her school field trips. She also signed, “Duck” because on one field trip to Mayfest we saw a person in a giant duck suit.
Great. Mayfest wouldn’t happen for more than a month, the duck might not be there, and the school probably wouldn’t go there again.
But, being the language-development-minded mama I am, I found the sign for field trip and taught it to her. Then she asked for “brown,” “bus,” “duck,” “field trip.” Pretty amazing.
Or so I thought.
About ten thousand brown-bus-duck-field trips later, I thought: What. Have. I. Done?
Then she started adding “seal” (clapping) and “fish” because someone told her the next field trip would be to an aquarium.
Friday, when we got home from her horse therapy, she cornered me in the kitchen. “Seal, fish, brown, bus, field trip.” I tried to tell her “later,” but she thought I wasn’t understanding she wanted to go the aquarium on a school bus That Minute, so she clapped louder. In my face.
She repeated the signs and clapping every few seconds, maybe ten times a minute. I’m not in MENSA, but that’s about 600 times an hour. I tried acknowledging. I nodded. I told her “later.” I talked about the aquarium. I talked about her horse. I talked about food. I tried to get her to jump on the trampoline. She communicated louder. In her case, that meant screaming, hitting her head, and more clapping in my face.
The shut-ups started deep in my chest. ShutupShutupShutupShutUP! Before I knew it, the shutups and other things leaked out my mouth. My words started quiet, but increased in volume. “I can’t tell you! I can’t control it! I can’t get a bus here or plan a field trip! I can’t talk about this anymore!”
Why did I ever wish she could talk?
Even as I thought that, an ocean wave of shame plowed over me. How could I be so calloused? Yes, I’m desperate for her to talk. Desperate to help her strive toward an independent life. I long for her to communicate, but not like this. Not the same thing over and over and over and over. It’s not communicating. It’s obsessing.
She clapped more, screamed, cried, kicked. I finally escaped to my water closet. I sat on the toilet and stared at the hole knocked into the wall by Rachel during numerous tantrums, many of them over wanting a stupid field trip.
For a moment, I envied my husband’s aunt, dying from cancer as I wrote this.
A wave of shame tsunamied over me. A hurricane of guilt followed. No, no, no, no, no. I didn’t mean that. I’ve already faced possible death from my own battle of cancer. I didn’t want to die. I just wanted to live to be a mom, I begged God to give me more time to be a mom.
But I couldn’t help thinking…I didn’t know, I didn’t know, I didn’t know how hard, hard, hard being a mom would be.
Even as I drowned in shame, I still envied our aunt, about to enter Heaven where communication disorders shouldn’t exist. Where pain and impatience shouldn’t exist. Where field trips, if they do take place, won’t be the subject of E.V.E.R.Y. conversation. Nor would I have to wonder “What Would Jesus Do” because I would be able to Watch What Jesus Does and thank Him for doing it instead of me.
What kind of person was I to think such horrible thoughts?
Probably a normal one who hadn’t slept well in a decade with a child screaming in the next room about a field trip.
I leaned over my knees. I wanted to escape. I wanted things to change. I wanted to see a day where Rachel wasn’t severely disabled. I. Hate. This.
My thoughts swirled around. “It’s not fair, God! I see so many families on Facebook. At the park, at schools, at the beach. People on vacations with their happy, shiny lives.”
I know it’s not all carnival games for them, either, and I know I don’t really mean it, but sometimes I find myself wishing I could have THEIR issues instead of mine.
Rachel still screamed, so I jumped into the shower and hid under the spray, my anger swishing and washing down the drain. Finally strong enough, I exited the shower and tried again.
And. She Kept. Going. Screaming and crying. Kicking and stomping. I knew that night would bring another middle-of-the-night bout of screaming and crying and kicking. She’d ask about a field trip, over and over. More holes, more damage, more moments of madness.
I called my sister. “I can’t live like this! I can’t do this for another forty or fifty years. It’s not fair, not fair, not fair. I can’t help her!”
In that moment, as I sobbed on the phone, I realized THIS wasn’t about this.
This screaming from Rachel wasn’t about a field trip. My screaming at Rachel wasn’t about field trips.
This was grief.
Earlier that day, we had stopped by my mother-in-law’s house to say hello and check on our aunt. I didn’t intend for Rachel to see her–the door was closed–but Rachel sensed her presence anyway and ran into her room. She stood in the doorway, signing “I love you,” but our aunt didn’t wake, was too weak. Rachel signed “Up” because she wanted her aunt to get out of bed, to talk to her like normal, but she couldn’t. I told Rachel she was just tired and that she loved Rachel, too, but I knew she wasn’t able to wake because she was so close to the end of her life.
A sharp arrowhead seemed to be stuck in my throat. I couldn’t swallow past it. For years, our aunt had reached out to Rachel, had worked hard to engage her. Rachel wouldn’t always respond, yet here she was initiating a conversation.
And her aunt didn’t get to see it.
It. Killed. Me.
And so, in my dark moment on the phone with my sister, I realized Rachel’s obsessive behavior was about anxiety, about my grief and the strange way I’d been acting, about the way her aunt didn’t talk to her, about the world not making sense.
Sometimes I forget how much Rachel sees and feels, even if she doesn’t exactly understand it all. And it’s amazing how much my stress level affects her anxiety. As her anxiety goes up, her repetitive behaviors and obsessive thoughts increase. It’s all linked, only I forget that I have to be the one who stays on top of that.
As those thoughts lined up like cars on a train, I thought about my personal struggle with death, I remembered the love I’d felt for my children in that moment. I grasped it with the tips of my fingers, a jagged little piece of hope.
I pulled it close. Yes, I could do this one more moment. One moment at a time. It’s difficult, impossible. I clung to my faith that gives me hope that someday things will be different, even if it’s not while I live on this earth. I clung to my faith that tells me God will give me what I need in the moment I need it. And I clung to my faith because sometimes it’s the only thing keeping me sane.
The next day we made some changes. We borrowed my mother-in-law’s recumbent bike as another way to help Rachel exercise more. The more exercise she gets, we hope the less anxiety she will experience. We took Rachel for a brown-bag-lunch picnic at the park, and in answer to my prayers, our aunt woke up and was able to see Rachel tell her “I love you” only one day before she died. And I’ve worked on my own emotional state. Like the Dog Whisperer says, a calm, assertive state of mind in the family leader creates relaxation and a sense of calm in the rest of the pack.